Living With Idiopathic Hypersomnia

There are day where I am so tired I rather die so I can get all the rest I will ever need. Days that I am so tired, out of energy that I don’t leave my bedroom. It’s one thing to complain about being tired but it’s another to never feel what full rest is. To never know what it is like to have a ‘good night sleep’. For people living with Idiopathic Hypersomnia this is their life. People with IH can sleep 1 hour or 20 hours and never feel rested, rejuvenated, or energize. It is a rare neurological disorder affecting about 1% of the population. There is currently no cure and very little treatment options. Since the disorder main symptom is excessive daytime sleepiness, stimulants are proscribe to help with the issue. But most overtime get used to the drug so it is only a short term solution. Imagine being tired after doing just a single task in your day and being drained for the rest. With you body feeling like it needs to sleep in order to function, even though you just woke up four hours ago. Even as I type this I am struggling to maintain focus to finish.

This disorder is a lifelong crippling, disabling disease. The public awareness about it is extremely low and it makes sense for it to be. No one wants to hear about a disorder that makes people sleepy all day. The stigma that goes along with IH is that people are just lazy, unmotivated, are weak minded. But think of yourself when you’ve gone almost 24 hours without sleep. Now think about how you function… That is how a person with IH lives their life on a daily basis. The constant brain fog and autonomous behavior. The constant struggle to stay awake at work or at school. Life in this world is already hard enough without a neurological disorder weighing down on your life.

People with IH also suffer from abjectly and depression. Depression being a huge issue. Feeling hopeless and agitated all at the same time. To feel trapped in your own mind and a prisoner of your own body. Trying to forever escape the tired zone that is your existence. Of course very few can comprehend and understand. I’m not sure the world will ever accept IH as a serious disorder. But I write this for myself and the others out there who suffer from it to let them know that they are not alone. That there are others out there with it and who understand. We are all in this fight together. And we all take on this fight one day at a time…. Continue to fight your battle!

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